Elin has started half term by visiting her Great Nanny and Grandad. Elin and my cousins two gorgeous babies bring their Great Nanny and Grandad so much pleasure and joy, I'm so glad we are still able to visit them in their own home. They like nothing better than to talk about all three of their Great-Grandchildren and my Nan's favourite thing is to regularly take photo's of them all down to the Bingo to show her friends :-) I know how lucky I am to still have my grandparents in reasonable health, so may of my friends are not in my fortunate position in their mid thirties. Despite their clear adoration of Elin, it must be quite difficult, I think sometimes, for them to fully appreciate her condition and the impact of it- or maybe I should say the severity of it. My Nan and Grandad hail from a time when children with severe disabilities simply did not survive. Or, they were removed from their families and left in special homes or hospitals until inevitable tragedy- something that seems completely incomprehensible in our modern world, horrifying even. This means that as my Nan and Grandad were growing up and until well into their adulthood, they would have had little or no experience of severely disabled children and probably adults too. Modern medicine must seem incredible to them . I suppose it was fight or flight in the 1950's - a doctor either made you better or you didn't survive. So this odd halfway house we inhabit where Elin can live and be (mostly) well, but not 'better' and with no prospect of being 'better' is a strange one for them indeed. As such, the prospect of Elin being 'better' is not something they are ever fully willing to relinquish. My Grandad finds this particularly difficult, probably because my Nan's nursing background affords her a slightly deeper understanding of the medical aspects of Elin's life at least.I'm not saying they don't love the bones of her as she is because of course they do and any intelligent person can see Elin's limitations and absence of ordinary milestones over the last seven years. But it's fascinating to me that they still think one day 'something' might turn up- a new medication, a new surgery, a new discovery. My Grandad asks me, in his wonderful naivety, why we cannot take her to America to get her 'fixed'. It breaks my heart. Not because I can't cope with the questions, but because I can't give him the answers he want so desperately to hear. That there is definitely hope, that 'you never know'.. Elin might one day walk, or talk. That stem cells research is 'doing so much these days'. So a while ago I stopped trying to explain and I went with it. Even though it goes against every fibre of my being to do so. Yes, maybe one day. Yes, who knows what stem cell research could achieve, yes, we will never say never. Because if I was 84 and I had lived through a World War, toiled down a mine working harder than any teenage boy these days could ever comprehend just to feed my family, witnessed many tragedies in my life time including great loss of loved ones and the world had become an alien place full of phones and wireless connections that I didn't understand and it was tricky to get about and life was daily feeling just a little bit harder.....what would I prefer? A lie that draws a smile or the truth that draws a tear?
I would want someone to lie to me every time.
So yes, Grandad. One day, in the future, when you are maybe no longer here, we will get our miracle on 34th street. Elin's going to be made better and we will tell her how much you loved her and everything will be ok. I promise.
You never know.